Genetic Testing Raises Tough Ethical Questions

July 16, 2002

Genetic Testing Raises Tough Ethical Questions

FYI

An Op Ed article in The New York Times, by Susan Love, MD, sheds light on the faulty assumptions that led to the discovery that hormone replacement therapy did not deliver on its promises. “There is a tendency, driven by wishful thinking combined with food marketing and media hype, to jump ahead of the medical evidence. In the 1950’s, it was DES, a drug given to pregnant women to prevent miscarriages. It was many years later that a randomized, controlled study showed that it had no effect in preventing miscarriages. Finally, in 1971 it was learned that the daughters of women who took DES were at increased risk of developing vaginal cancer.” She goes on to list other such medical debacles as bone marrow transplants for breast cancer, and knee surgery which, last week was declared of no benefit. [Susan M. Love, “Preventive Medicine, Properly Practiced,” NYT, A-17: http://www.nytimes.com/2002/07/16/opinion/16LOVE.html ]

So far, the biotech industry has made spectacular promises and fortunes for its CEOs but delivered no medical breakthroughs. The industry now promises that genetic testing will lead to breakthrough medical treatments and cures for disease. Before the legitimacy of their promises can even be assessed, the process–a vast human experiment–toward achieving that end is fraught with immediate risks for individuals. Genetic testing across the globe puts individual citizens’ privacy and best interests in jeopardy. A report from Reuters (below) focuses on this ethical dilemma: “Alex Mauron, a bio-ethicist at the University of Geneva, said advances in testing are highlighting the issue of patients’ rights to control information about their bodies that cost-conscious employers or insurance companies might love to have. ”

As is often the case in human experiments, individuals subjects are first to bear the adverse consequences. In this experiment some of those tested are facing job and insurance discrimination because of a detected predisposition to an illness–before anyone has proven that mere genetic predisposition results in illness. We have not heard much from the Presidents’ Council on Bioethics.

BASEL (Reuters) – Try to imagine a world in which you plan your health the way you now plan your finances, a truly cradle-to-grave approach that detects and counters the risk of disease.

Now imagine paying huge sums or being turned down for life insurance and health coverage by companies that deem you too high a risk–even though you feel fit as a fiddle.

Those are the opposing visions of genetic testing that are gradually emerging as the technology spawned by a deepening understanding of the human gene pool moves out of the laboratory and into everyday life.

Trumpeted by healthcare companies as a breakthrough for treating and curing disease, genetic testing also poses tricky questions about the privacy of medical data and people’s right to know–or not know–the risks their genes may hold.

Progress in genetic research is not yet creating superhumans, but genetic testing will allow early detection of potential health weaknesses and may pose ethical questions about whether they alone or society in general should bear the higher costs.

“Genetic testing will bring–and perhaps is one of the major ways we can bring–more effective healthcare to the societies we serve,” Jonathan Knowles, global head of research for Switzerland’s Roche Holding AG, said at a recent symposium.

SEARCH FOR LINKS

The world’s biggest diagnostics company and its DeCODE genetics partner have scrutinized Iceland’s relatively isolated genetic pool to come up with links to 13 diseases such as schizophrenia, Alzheimer’s, diabetes and stroke.

Great Britain is building a biological database of half a million people to map which genes may lead to which illness. And laboratories around the world are working on diagnostic tests, hundreds of which are now available to detect risk of disease.

The focus is on the likely health impact of tiny variations in genetic structure–the inherited blueprint of life that dictates everything from the color of your hair and eyes to the risk of getting cancer or suffering depression.

Scientists are still investigating the complex interplay between genetic mutations and environmental factors like smoking and high blood pressure in triggering common diseases, but awareness is growing of ways to identify genetic risks and test for them.

The question now is what this will mean for patients, employers, insurers, government health plans and others who confront the practical implications such knowledge brings.

Alex Mauron, a bio-ethicist at the University of Geneva, said advances in testing are highlighting the issue of patients’ rights to control information about their bodies that cost-conscious employers or insurance companies might love to have.

But he distinguished between the legitimate differentiation insurers make when assigning risk to individuals based on their medical profiles and the kind of social fairness that ends when people are denied benefits that should be equally available.

“You can have a lucky draw or an unlucky draw and there is no fairness in that,” Mauron said. “If there is to be any fairness at all, then it is only at the level of social arrangements that choose which of these lucky or unlucky draws it has to compensate and which ones it decides to leave alone.”

GRAY ZONE

The problem is the growing gray zone between the two.

Private life insurance is not a universal right. But what happens when you need life insurance to get a mortgage on your home or business, or when equal access to health coverage and pension plans is jeopardized?

“We are at the beginnings of possible abuses,” said Alexander McCall-Smith, vice chairman of Britain’s Human Genetic Commission, which last month proposed steps to safeguard the privacy of someone’s DNA but still encourage medical research. “This is the point at which we should counter that.”

Already some employers and insurers are misinterpreting genetic data to weed out staff members or potential customers whose risk of medical problems is deemed too high, he said.

“It is undeniably the case that there are people who would be very prepared to use this information to draw conclusions which may not be justified, to give it a predictive value it does not merit and, therefore, I think it is necessary for society to respond to prevent that happening,” McCall-Smith stated.

In Germany, for instance, the trend is for insurers to ask would-be policyholders to provide results of genetic tests, noted Ekkehardt Jecht, a physician and patients’ advocate.

“You have to pay more if you cannot give them a genetic test you have done previously,” he said.

Other countries like Britain have a moratorium on the use of genetic testing by insurers, who see the technology as a way to glean more precise insights in clients’ health prospects.

HARD TO REGULATE

But McCall-Smith wondered how regulation at the national level could have any impact when companies offering over-the-counter genetic tests for dietary advice or to determine paternity can simply post their services on the Internet.

On the other hand, why should results of genetic testing be treated any differently than other medical risk factors? After all, people buying insurance give details about themselves and their family medical history without a second thought.

It is generally accepted that discrimination is barred in cases where everyone has to have obligatory health insurance.

“But when it comes to a product like life insurance, where you decide whether you want it or not, you have to have an open business way of doing it. At present, it is no big deal for the insurance sector, but it will be if the tests become much more predictive,” he said.

A reliable genetic test for longevity, for instance, could sway people with a short life expectancy into buying life insurance and those with a longer life span to buy an annuity.

“If you want to still have a private market for life insurance you cannot allow that because the response of industry would be either to increase the premiums for everyone to cover this additional risk or you have access to the tests, at least to the tests which are significant,” he noted.

This would skew the basic principle of insurance that people with the same basic risk get cover to pool their exposure.

“We insurers should have the same information (on genetic tests) as the client. If he has none, we don’t see the point in having it. If he has it, we should know. That is the basic story,” von Overbeck said.

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Random Quote

We must denounce the inhumane distinction between a worthy and an unworthy life. Every human life is valuable – that’s the message of this T4 Euthanasia Memorial. The ‘T4’ memorial confronts us today with the harrowing Nazi ideology of presuming life can be measured by ‘usefulness.’